Tag: communication

It’s Not Over Just Because Chemo is Over

Wow! There are so many things they don’t tell you about being a cancer patient! When I say “they” I am referring to a proverbial all-inclusive group of people that includes everyone that is in charge of your care and even other patients who are unable or unwilling to share their experiences. I am learning a lot as I go and I am convinced more than ever that it is my mission to pass on what I know or have experienced to all of you. I am still determined to be the flashlight that helps guide patients through both their cancer experience and what comes after.

So, here is what I have realized. It is not really over until it’s over. What the heck do I mean? Let me explain. Most of us logically assume that when the last drop of chemo has coursed it’s way through our blood stream and the most recent scan confirmed that we are cancer free, at the moment, that we are, in fact, done! Yay! Hooray! Whooo! It is time to party, right? That’s what I thought. I really truly thought, or at least hoped, that the moment I got that final good news that this warm and fuzzy feeling of overall cleansing and good health was going to wash over me, my energy and health would be renewed and I would be ready for anything that came my way! Nothing could have been further from the truth. Now I am not blaming anybody. Nobody told me that that was going to happen. I am solely responsible for my own rose-colored glasses personal patient vision. However, nobody counselled me to the contrary either. I was just kind of left to figure it out after my perfunctory but heart felt congratulation speech from my health care team.

Here is what really happened. I got my good news. I was elated at the moment and kind of skipped out to my car( and then got short of breath from skipping..lol). Then I got into my car and, ironically, We are the Champions by Queen came blasting on the radio. I then proceeded to sob hysterically for about 20 min before driving home. I want to believe that the tears were all happy, but now I am not so sure. My mind started racing with all kinds of different thoughts ranging from yeah, I’m free to omg what do I do now and who is going to look out for me? My head was completely spinning. I had to take a minute before my head was clear enough to drive home. I started to realize that this was not really over. I had the next five years of my life mapped out with repeat scans and follow ups. Was it going to really be over then? What if I got some weird symptoms or twinge in the wrong place? Should I ignore it or should I worry because something else might be wrong?

I spent some quality time trying to talk myself down from the ceiling and rationalize the fact that I would need to give myself some time to be able to process information from my body normally again. That lasted all of a few minutes before I was on the phone to my therapist, making sure that I had regular appointments scheduled for the next several months. I was not going to be able to do this alone and I wasn’t allowed to restart my anti depressant for another month or so.

Ok, so now I had my therapy appointments in place. I rebooted my calm app on my phone. I reached out to my friends and fellow patients. I felt like I was doing everything right, or at least what I could do at the moment. Everything was going to be ok right? Nope! Then, the later complications of chemo started rolling in. My liver and kidneys took some hits and had to recover and my thyroid died completely. All the symptoms I was having that I was trying to assume were psychosomatic were actually real! Some of the stuff could have actually killed me! Thank goodness that we have modern medicine and options for all of them, but still scary nonetheless. There was no room for relaxing! There WAS still stuff to worry about! I knew it! My doctor said that some of these complications and side effects could be a factor for years afterward. Fantastic! I understood going in that there was going to be a risk trade off in exchange for curing my cancer, but on some level, I don’t think I fully understood just how significant the risks would be. I don’t think any patient does.

Here is where I think we need to do better for patients. We need to do better than handing someone a stack of papers several inches thick to read over and sign. We need more than just one chemo teaching session. We need to counsel patients that complications are real and that we need to have a reasonable level of vigilance after treatment is over. We need to recognize that PTSD is real and affects people that have experienced any kind of trauma, whether it is casualties of war or cancer. There needs to be a plan in place for those kind of things BEFORE they happen. We need to shape patient’s expectations for their treatment and for themselves BEFORE things happen. We need to give the a glimpse into what can happen and what they can expect and let them know that we have tools to address all of it. I have to believe that being proactive could potentially save a lot of suffering, both physical and mental, for patients. It has to be better than being behind the eight ball and struggling to deal with all of these issues when they are already full blown and both your mental and physical energy is already depleted.

Here is the bottom line. I am proposing a new plan. First, start with detailed one on one counselling before treatment starts for as many sessions as necessary with the key goal of shaping expectations and making preparations. Second, assign each patient a mentor who has actually gone through the process that can be a touch stone throughout treatment and beyond and who can offer encouragement, and more importantly, guidance and reassurance as things happen. Third, anticipate the possibility of PTSD, complications, and side effects after and during treatment and try to prepare the patient as best as possible. Set them up with therapy from the beginning. Start them on medications if possible during treatment. Be vigilant for side effects and try to catch them early. This all sounds like common sense but I am willing to bet that it is NOT common practice. I truly feel that implementing these few extra steps would have a tremendous positive return on patient recovery and outcomes that would far outweigh any additional healthcare costs incurred. I guess it boils down to what the true goal is : patient survival in terms of numbers versus patient survival in terms of whole health, mental and physical. Last time I checked, we are all more than just a number.

Dr. Katz

What do you look for in an obgyn?

This question actually has multiple answers and is a more complicated process than selecting a primary care physician. The usual selection criteria apply of course: 1) Is the doctor in your network? 2) Are they local and easy to get to? 3) Does their availability(office hours) fit your availability? 4) Do they have good reviews? 5) Do you know anyone personally in your family or friend group that already sees them so that you can get firsthand feedback?

These are good to go by when attempting to select any physician, bearing in mind that reviews on google can be written by anyone anywhere, even if they have never been in the office in question. Having family feedback is good as well, provided that you know the whole story surrounding their comments. ( i.e Grandma Martha hates Dr. X, but also has multiple no show appointments and owes the office a lot of money that they are rightfully trying to collect) You see what I mean? Even the seemingly best source of information does not compare to your own personal experience.

Having clarified all that, I feel that selecting an obgyn adds yet an additional level in selection complexity. Finding the right obgyn means finding someone with a communication style and listening skills that make you feel comfortable enough to discuss some of your most personal and potentially embarrassing issues. I mean, you can’t go discussing your vagina and hormones with just anybody. Hopefully you are able to find somebody that listens and “gets you” at the same time.

This is the kind of thing I strive for the most….the listening part I mean. It is so so important. Many of the women that I see are frustrated because they have spent years dealing with unresolved issues because they either did not feel comfortable mentioning them to their previous physicians or they were dismissed. This should never happen. Every single patient deserves to be listened to and, in my opinion, if they have an issue that you are not prepared to deal with, they should be referred onward to someone that can. The patient should never have to suffer due to your lack of comfort or familiarity with their particular problem.

I received a compliment once from a patient that I did not understand at first, but now I consider it one of the best compliments I have ever gotten. She said that coming to my office was like coming to a girlfriend’s house. At first I thought, what the heck does she do at her girlfriend’s house? My face must have registered my confusion for a minute because she went on to explain what she meant. She meant that I was able to make her so comfortable at my office that she was able to disclose and discuss anything and everything that she wanted to. That is my job, my sacred mission, and what it’s all about. Have a great night everybody!

Dr. Katz

Please tell your doctor everything…at your actual visit and while you are still in the room if you could.

Hello everyone. This is just a quick public service announcement on behalf of physicians everywhere. Everyone knows that it is our sacred responsibility to care for other human beings to the best of our ability. OK great. What seems to elude everyone is that our ability to be able to care for someone is highly dependent upon the information that we receive from the patient….at the time of their actual visit. I am always talking about the doctor patient team relationship and the communication between the patient and the physician is the absolute pillar and foundation of that relationship. There is no way that I can do my best to take care of you without knowing EVERYTHING there is to know about your health history and the details of the concern that you have. You are master and commander of your own ship. I am just the first mate. I help steer but I am not actually in charge of the course. I cannot act on anything that I don’t actually know about. I need you to tell me all of your symptoms and all of your history in order to help you. Every detail is potentially life or death important. Something you may think is trivial could be the absolute key to your health and survival. It is not safe to think of all the physicians that care for you as separate individuals. We are all on one team and we all need to be on the same page with the same knowledge base so that we don’t do anything that could cause you harm. We may be several different physicians, but we are all working with the same individual and everything that we recommend affects you. You can’t assume that everyone has access to the same information. Most of the time, we are getting our information from you so you need to be an active participant in letting all your team members know what is going on with you. The bottom line is: there is no such thing as too much information. Leave it to me to filter out what I need and what I don’t. Don’t self censor. It could cost you your health. And please, try to mention it while we are still talking in the room if you could. Have a great day.

Dr. Katz